Totally devastated by this illness!!

Posted , 6 users are following.

Hi All

I've posted before but today I'm having a really bad day. Feeling so nauseous with my ear full and ringing. After having a good day yesterday with a slight bit of wobbly head I woke up to feeling c**p. Even my jaw feels funny today like it's to big for my mouth. Odd I know. Can I ask you all if you were given various tests as I have been referred for ENT but the appt isn't til November. I'm on betahistine tablets but scared to take them daily as I read it hinders recovery. Not one doctor has actually said what I have but hinted at Labryinthitis. Been off work 2 months and no sign of recovering yet. I'm wary of exercising as I may do more damage than good. I have another doctors appt this week to get another sick note. Should I demand more tests done as not one doctor has given any advice on how to cope etc.

I really am not coping well and not sure how to get through to the doctor how I'll I really feel. As I've suffered with anxiety in the past I'm sure they think it's all in my head. Wish it was sometimes as then it would go away.

This is a devastating illness which has changed my whole life.

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  • Posted

    I have had issues as well. I think it's my neck. You may want to go to a cervical chiropractor and have them do an x ray on your neck. Look up C1 and C2 and dizzy and see if that is you. Also you can go to facebook and look for groups. Type vestibular and many groups will pop up. Maybe somebody there can help.

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    • Posted

      Thanks rock solid

      I will check out what you have said. Everything takes a long time in England as our NHS is under staffed and under funded.

      If we want to be seen early we have to pay privately .

      Never even heard of a cervical chiropractor so will check websites.

      Many thanks.

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  • Posted

    You poor thing! I’m sorry I can’t offer any help only support. I’ve been having issues with fluid in my ear for years but only very recently started expediencing dizziness. I’m asking for an ent referral tomorrow.

    I believe you that it’s not all in your head.Some kind lady on here said to me the dizziness causes anxiety which then fuels the dizziness, I suffered no where near as badly as you and I feel like I’m going mad so I can only imagine how bad you feel. It’s very difficult to explain to someone. 

    Maybe try explaining to a doctor next time you go just how much this has impacted your life and how much of a struggle it is to cope and ask if there’s not advice they can give. I get the impression that it’s sometbing they don’t take seriously enough. I’m sorry you’re suffering 

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    • Posted

      Thankyou for your reply debby. Off to the doctors Thursday and I'm going to ask for help and advice and not get fobbed off this time. I'm so shocked how many of us are on this forum with no real cure available. It would be nice just to know exactly what it is that I have but I assume the doctors don't know enough about it.

      Glad this forum is available.

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  • Posted

    I have been having issues for several months now, been to ENT and had mri done on head, says there is nothing noting that it is to do with inner ear, even tho my gp seems to think it does... it's so annoying... I can not lay flat on my back without getting a dizzy spell come over me and I get so much anxiety from that feeling as it scares me, I feel like I am going to pass out.... the room doesn't spin, it feels like the spinning is inside my head.... anyway doc has referred me to a neurologist as per ENT requested to have them investigate the dizziness and ear ringing.... I have a couple days where the buzzing/screeching/annoying sound in my ears seems like it goes away and I breathe a sigh of relief, then it'll come back 10 times worse than before.... ughhh, this has happened several times now.... I have not been prescribed anything for it... I had a hearing test done and there is no indication of that causing the ringing... this is so frustrating to say the least.... I can't go anywhere as I am always feeling dizzy, nauseated, legs sometimes feel like rubber, aches and pains in feet and legs are crazy.... it is devastating indeed.... good luck to you, hope we can get this figure out and under control.... I just want to feel my old self again

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    • Posted

      Hi Sheila

      Thankyou for your reply.

      I'm 55 yrs old and thought life was meant to get easier as you get older. How wrong was I. I can honestly say it's the 2nd worst thing I've had to deal with. I lost my husband 10 yrs ago suddenly and that was just the worst thing ever but I picked myself up and started to live again. Now this has happened and it's such a challenge. I know there are people who have serious illnessespecially but this is so life changing in different ways.

      I wish the doctors would take it more seriously.

      I will definitely speak to my doctor on Thursday and ask for more help and advice.

      Hoping you find peace from this illness soon.

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  • Posted

    Hi Helen,

    I know it is very difficult trying to deal with this illness which seems menial to a lot of people as they have no idea og what we are going through. I am 57 yrs old and like you said, thought things would be a lot easier for us. A lady I worked with told me in her 40's she always seemed to be feeling like crap and her Mom said, oh you will appreciate the 50's as you will feel like a brand new woman.... a couple years ago I brought this up to her and said your Mom lied about the feeling so much better in our 50's cause I sure as poop don't, she laughed and said she didn't feel any btr either... lol... I feel my doctor don't take a lot of the way I am feeling serious and thinks I am a basket case most of the time... it's hard when the people you should be getting the support from makes you feel like you are just making too much of things, it becomes even more frustrating. As for me, I have most recently been diagnosed with under active thyroid and on meds since Feb and have had to have strength increase since then... so last year in June, all my blood testings were excellent, I had been complaining to him several times throughout the year that I feel extremely tired yet can't sleep, etc... my skin had become so dry and been gaining weight etc.... he kinds put it off as well cut back on your eating etc, which upset me.... finally he sent me to have thyroid checked and yep it was out of whack... so now in the past year, my blood pressure has elevated, my blood sugars have elevated, iron is low and now have an elevated inflammatory marker on top of being slammed with the dizzy spells and ringing in the ear since January.... so yep very frustrating when I try to talk to my doctor about all this stuff and not getting any answers to my questions as he seems to shrug a lot off.... I have had EKG's, ECG's, D-Dimmer, all the cardiac blood work, lung/chest X-rays and everything there is all fine, thank goodness for that... it's all the other things to get figured out.. so yes, I do know that some of my complaints pale in comparison to others, but it's still frustrating.... . I am so sorry about the loss of your husband... I hope you find the answers to your issues with this also.... I do find it comforting to be in the different discussion groups on here and to see what others are experiencing in relation to the things I am dealing with also.... Take care

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    • Posted

      Sheila

      Just thought I'd mention I have an underactive thyroid for last 20 yrs. Ithe was overactive for a few years so I had radioactive iodine treatment to shrink it. Currently on 125mcg levothyroxine. I must say I preferred it overactive as I had more energy and was a lot slimmer. Another disease that doctors don't really know how to handle but after a while your body tells you when it's out of whack. Hopefully your dose will improve your symptoms but it takes a while. Apparently anxiety can come hand in hand with thyroid problems but not sure why. As if we don't have enough to deal with!!!

      There could be a link with this ear problem and thyroid issues as it's all to do with auto immune system .

      Maybe one day someone will look in to it all.

      Thankyou again Sheila.

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  • Posted

    Perfect excuse is the good old anxiety for our NHS system.

    I wen't to A&E via ambulance at the start of Aug last year. They thought i might of had a stroke but i hadn't. I had been 24/7 dizzy and off balance for 2 weeks solid and have been EVER since unrelenting. I had started having dizzy spells on Boxing day 2016 that had been getting more and more frequent and i kept mentioning it to my GP throughout May, June and July. 

    When i left A&E my GP was told to do an urgent vascular appt as they thought it may be a vascular problem. Got my vascular appt and an urgent was going to take 4 months, yep 4 bl##dy months!! I had to phone, push and fight and it still took 10 weeks.

    My vascular checks came back fine and the consultant thought i should see a neurologist so i was referred Oct 27th 2017 and was finally seen 3 weeks ago tomorrow, so i had to wait over 30 weeks and even then i had to complain or it would have been much longer. The neurologist ordered an MRI of my head and neck which i had last week.

    If this shows nothing up i guess i will get referred to ENT and according to my hospital it's a 21 week wait.

    Since going to A&E nearly a year ago i've been onto my GP 24 times and he's been so obtuse you wouldn't believe.

    The reason i mentioned anxiety at the start is i've had anxiety for 13 years but i had it pretty much under control until all this started. To be honest nobody has mentioned it but i know what they're thinking. I 100% know it's not anxiety related but my anxiety is the worst it's ever been due to all this and when i've needed the NHS i've been severely let down, never thought the NHS was this bad but it's dire! 

    I'm 45 with a young family and not worked for nearly a year because of this.

    Sorry for the ramble but you're not alone.

    All The Best

    Matt

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    • Posted

      Thanks for the reply Matt. It must be awful for you as you have a young family to try and be there for. I'm lucky as my daughter is now 22 and independent.

      I agree about the NHS being so dire. How can I get better if I have to wait til November to be given a diagnosis. Ridiculous. No work means no money which obviously has a massive impact on everything.

      Well take care and thankyou again.

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  • Posted

    I totally understand.  I have been fighting this for 22 months.   Been to ENT.  Neurologist, PT for 3 months and specialist that day I should be better in 3-6 months.   That was 18 months ago!   I do not spin but feel like I’m on a ocean all the time!   Been off work for 22 months.    Wish I had a solution for you but push for testing of the crystals to make sure that isn’t your problem.  You can YouTube PT for vestibular and start that now.   Don’t be afraid of damaging it worse it is already bad!!   I have a hard time driving as well.  No more than 30 minutes without pulling over to get sick!  

    I am going to a naturalist and she has helped me more than any doctor so far.  For the past 4 months thing have quit rocking quite so much but it is still there.  3 days ago I got worse again so going to make the 9 hour trip to see her again and see what has gone wrong this time.  I set it off by getting on a pontoon boat thinking I was a lot better!   Ha!  Been very sick ever since!

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    • Posted

      Hi Janet

      That's so typical. You try and do something normal and it takes you back to square one. I bet your gutted.

      Last week I had 2 reasonable days so decided to help my elderly mum with her garden. I was digging and weeding just for an hour or so but the next day I felt dreadful. My ears were full I was fuzzy and felt so sick. Really don't know what to do as I'm usually so active.

      Well I guess we try and make the best of the good days but have to learn our limitations.

      Thankyou for PT advice. I will look on you tube.

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  • Posted

    Hi Helen I feel your pain bless ya I was told mine is prob labyrinth but he said I’m getting to stressed about it grrr I thought u try having this feeling 24/7 it’s vile I’ve got to stage I don’t want to wake up as another day to fight through I like u have anxiety so it’s making it worse and I’m sure they think it’s tht it came in after a bad throat cold virus I know it’s not anxiety  x
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  • Posted

    HI Helen

    Unless someone has this condition they really haven't a clue how awful it is.

    Got a massive headache today with ringing in my ear so taking it easy and trying not to get stressed. Every day is a battle isn't it. As soon as I open my eyes in the morning I hope for a good day. Don't think I will ever take good health for granted anymore.

    Hope your having a better day.

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  • Posted

    Yea I’m the same I get up and if it’s not there I think o good but then I get up and I can feel the swaying off balance feeling grrrr . I’ve only had it three weeks but it’s getting me so honest it’s the most awful feeling isn’t it . I have the council in they are ripping out my kitchen and bathroom doing it all I was look forward to it the other month then I got this and just want them to get it over and done with and go it could take between two and six weeks . It horrible having people in your house when u are like this . The doctor just says it will go usually last three weeks  well it’s been three weeks and I feel no better  . I bet if they had it they would get treatment straight away not just. Keeo saying o it will go soon grrrr x
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